So many of us with disabilities grapple with this question: “Am I A Burden?” So many of us who are disabled and who are in need of care know this question all too well. We also know the socially acceptable answer from our friends, peers, lovers and colleagues is categorically: “No, of course not.” But, despite how many times people have reassured me I’m not, it can be really hard to shake the feeling of being a burden.
Let me explain a little bit deeper. When you are disabled, especially living with complex disabilities like I do, you need help with pretty much all the things, and you get used to that to a degree. But what I think you never really get ready for is what happens when your disability calls the shots, and you need more help than you anticipated. or expected. Then, care workers or family members might get pulled away from something that they want or need to do; leaving you, the one who needs help, feeling altogether responsible for de-railing their day or taking time away from them. That’s the feeling I am interrogating a lot lately, and try as I might it won’t go away or dissipate.
As I get older, and navigate my disability changing, the feeling of being a burden morphs right along with it. It can be hard to tell people that you didn’t want to go somewhere because, as a disabled person, you have a nagging yet indescribable feeling that you’ll be in the way.
Let me describe this feeling for you, for those of you reading who might not experience disability in this way. For me, this feeling lives right above my breast bone, and every time I think about going out with a new friend, going on a date, traveling, going to a restaurant - really anything that might even slightly might require care from someone - it pangs me. “What if something happens?” “What if you ruin their day, and they realize you were too much after all?”
I have pushed this feeling down a lot, told it to shut the f&@k up, pretended I didn’t feel it, ignored it as best I could, but it was there. It is there. Reminding me that my disability is a problem, even when everyone else around me promises me it isn’t.
Just sharing how that feels, which is something I don’t think we explore enough when we talk about disability. I hope it resonates with you dear readers.
Thanks,
ag